Marjorie, Problem Child, Goes to Rehab

So I haven’t written a damn thing in months. I started to write some depressing piece about how down I was feeling a few months ago called “Demons” but the feeling passed and then the moment passed and the few incoherent dribblings I managed to eek out will forever fester in the land of blog post drafts where they belong.

It is now May. The month of my birth. And swiftly approaching is my 44th birthday. 44. A nice round number. It feels like ages ago that my 40th was approaching. We had a party at an Italian restaurant in London. Bill, who suddenly took deathly ill the day of the party — he was literally green and nauseated — managed to drink a Coke, rally and give a heartfelt speech about how great I am. There are pictures of me embracing him following such speech and veering to one side (because I did not want to catch whatever the fuck was ailing him in my delicate condition).

Never in one million years would I have believed you had you told me in advance that I would be as bald as a cue ball for my fortieth. It was such. A weird. Thing.

Moving right along.

When last we met I was going on about how hot I was planning to be super hot this year following Marjorie’s scar revision. (Read my previous post if this is not ringing a bell). Forever the optimist, I kept thinking that “this time around” Marjorie might be okay. That she would come out of it and be better. But the reality is that I am just not sure about Marjorie.

She is not what I would call behaving 100%. You see, radiated skin does what the hell it wants to. It is never the same following the radiation, which affects, among other things, the blood supply, and tends to make things fibrotic (think tight and painful). So when the swelling from surgery subsided and the scar went from looking like Frankenstein’s monster’s forehead to a discolored horizontal line, I noticed the skin around the incision starting to harden up. And telltale signs of the tethering that we were trying to fix in the first place.

The turn of events went something like this: There I was minding my own business abstaining from upper body exercises for what seemed like an eternity and then I had a post-op check-up and got the all clear and then it snowed. Not a little.

So I took it upon myself to go out and shovel the hell out of my considerable driveway, which was the first upper body workout I had done in about 6 weeks. The day after that, I noticed that Marjorie was starting to hint at being up to her old tricks. It was like finding a lighter in your kid’s room after you caught them with cigarettes (or worse) and they swore they would never smoke again.

Shit, I thought. Marjorie is up to her old tricks again. I am assured that shovelling snow did not suddenly cause this behavior, but naturally I began blaming myself for this possible development and wondering why I didn’t just leave the snow and let everyone make fresh tracks in it.

The good news: Marjorie looks better than she did before. She does. I have not dusted off the chick fillets or resulted to spackle and I can wear stuff sans padding and be pretty happy with the result.

The bad news: there is definitely some misbehavior. Marjorie is not, in the esteemed words of Taylor Swift, out of the woods.

Solution: Marjorie goes to rehab.

That’s right, the bitch, in classic attention seeking fashion, is demanding all sorts of special treatment. This includes being massaged with expensive body cream from France and a special scar tweaking rub that I do about twice a day, time permitting, to try to loosen up that area. And we even see a specialist physiotherapist who deals only with problem children such as Marjorie. This is weird because every time you cross paths with someone coming or going from the PT’s office you know this person is a member of the same club and she knows you are too. It isn’t discussed. It is a silent understanding, hanging heavily in the air. All of us ladies and our Marjories.

We are not praying for perfection or even really hoping for normal. Rather we seek improvement; we are just trying to make these casualties of war “as good as they can be.”

This is where a bunch of people will chime in that we ladies are just lucky to be alive and that this is what’s important and we should be thankful for that because it could have been worse.

Here’s a bit of advice. Don’t you ever even THINK of saying that to me or someone like me. It’s dismissive and ridiculous. As if we, of all people, do not understand that having a sightly dented boob and some pain and tethering from scar tissue, or even NO BOOB, is preferable to being six feet under. Ask yourself why you would say such a thing? Is it to make the recipient of the comment feel better, really? Or is it a nice tidy end to an uncomfortable topic that you have decided is no longer worth discussing?

Hell to the NO.

Seeking improvement is a normal human behavior and part of the process of getting on with one’s life. So this should be encouraged (unless of course the person at issue becomes obsessed or unrealistic about what is possible at which point it might become unhealthy behavior).

But just let me try to make her a little better. I can settle for “good enough.”

At the end of the day, the irony is that Marjorie is getting by far more play than her predecessor ever would have on a daily basis, and she cannot even feel it.

What a waste.

A New Kind of Greeting Card

My friend Mark just sent me the following link. Check it out — here is a designer who, inspired by her own experience, decided to design some greeting cards she thought would be appropriate for dealing with cancer. Not a bad idea. Maybe I should get in on this. Funnily enough, I can relate to each and every one of them based on things people said or didn’t say while I was going through treatment, even if I would design mine slightly differently.  🙂

http://www.slate.com/blogs/the_eye/2015/05/06/empathy_cards_by_emily_mcdowell_are_greeting_cards_designed_for_cancer_patients.html

It Does Matter

It’s so easy to hear about someone else’s problem and to make an immediate pronouncement about it. How they should feel, what will happen, what matters and what doesn’t (or at least what should matter and what shouldn’t) in the grand scheme of life. The thing is, sometimes you have to bite your tongue.

Let’s face reality. People do not generally like to hear about other people’s problems because most of the time they don’t really give a shit and other people’s problems are boring, annoying, uncomfortable or some combination thereof. I think that we often lob back a not-so-well-thought-out response because we feel that we have to respond to achieve some sort of closure or resolution. Or just to fill the awkward space after someone pulls back the curtain.

But there is something to be said for the American Indian approach to conversation. A long reflective pause can come in handy. It allows one to collect one’s thoughts and assess the new information. Listening is almost always a good thing. Responding without thinking is often not.

What exactly, you might ask, am I getting at? Well, I’ve been noodling about conversations I’ve had and people’s reactions to things I have shared with them. Most of the time I am blissfully upbeat and am able to cope cheerfully and with a good deal of humour. But I, like everyone else on the planet, have my moments of negativity and frustration. And I often feel that whenever I gripe about something I get that rapid-fire response. Shut-down before the conversation really even starts. Sort of like “well you’ve had your cancer and beaten it so really you should not complain about something as trivial as the way you look.”

No one likes a complainer. But people do need to be allowed to express negative feelings sometimes and just because you are on the receiving end of such does not mean you are responsible for “fixing it.” Nor is it your job to dismiss a person’s complaint with a one-liner, although I am 100% certain that I have been guilty of both trying to fix things and dismissing negative observations with an immediate response on numerous occasions. So this is directed at me just as much as anyone else. I should practice what I preach, after all.

I’m looking back, trying to reconstruct (no pun intended) the past eighteen months of my life. How I was then, how I am now. And how my thoughts and feelings have evolved with the passage of time.

I’ve boiled the whole breast cancer ordeal down to two phases. Phase One: kill the enemy. Take no prisoners. This was the honey badger phase. If you don’t know what I am talking about read some of my early blog entries and you will find that the honey badger became my mascot early on in the process, primarily because it’s one naaaaaasty lean, mean killing machine (and secondarily because Randall’s ridiculously effeminate narration on YouTube makes me giggle my ass off).

The goal of Phase One was to eradicate the disease. It felt urgent and critical and it was not difficult for me to be single-minded about the process. The mission was to do whatever necessary to maximise my chances of beating this fucker. So basically I got down to bidness PDQ and that was that.

Throughout treatment I remained hyper-focused on my mission and had only one speed: full steam ahead. I did what I did because I had to do it so I didn’t waste a lot of time being sad about the process. I just pushed through it and tried to amuse myself and others by, among other things, wearing absurd outfits to chemo and walking around London in a pink wig, because I had no choice and I knew it would be over eventually.

At the same time, however, I did spend time considering Phase Two. Phase Two would involve my eventual cosmetic appearance. As my plastic surgeon friend pointed out, once the cancer is a distant memory what you are left with is your reconstruction. It might not seem that important in Phase One but it could later so it needs to be considered carefully from the beginning.

As one relative aptly put it while we were awaiting a diagnosis, “well it’s really going to suck if you have to cut off your boobs, because you have nice boobs.” Yes, I thought. It will suck. And in fact it did and does suck.

Knowing that I had to do it didn’t make it suck less; it merely made wallowing over the suckiness somewhat futile. But still, sometimes I allow myself to wallow just a little bit. Mostly by myself in the privacy of my own home, like while I am curled up on the couch at 11:00pm having just finished another episode of Mad Men courtesy of Apple TV. What? Oh I am only on Season 2 and yes I know I am about the only American left who hasn’t watched every season. Sue me.

Sometimes I do feel that it would be awfully nice to have real breasts again. Something soft that bounces when I run and something with nerves that might notice if I inadvertently walked into a wall. Sometimes I do feel that I am missing something. Something feminine. Something womanly.

In her Op-Ed in the New York Times, Angelina Jolie wrote about her decision to have a prophylactic double mastectomy to reduce her risk of developing breast cancer for which she is a BRCA gene carrier. Ms. Jolie lost her mother to ovarian cancer and very recently, her aunt to  breast cancer.

Ms. Jolie’s doctors estimated that she had an 87% chance of developing breast cancer and a 50% chance of getting ovarian cancer. So she decided to be proactive. She underwent radical surgery so that she would significantly reduce her risk of enduring a Phase One. She went right to Phase Two. It was her choice and in my opinion it was a good choice, a choice I would have made under similar circumstances.

As it turns out, I did not have the “luxury” of foresight with my disease (btw I am not a BRCA gene carrier). So for me Phase Two was not something that I chose but rather something that I had to do. It had no choice but to remove my right breast, although I could have kept the left breast. My thinking was logical. I sort of felt like I might as well just be rid of both if I had to lose the one. That way at least I would be symmetrical, make the plastic surgeon’s job easier and not have to get screening on the left side all the time wondering if disease would develop in that breast.

The decision to remove one or both breasts preventively is controversial. Some believe that doing so is a “psychological” choice rather than a medical one. Meaning that what could arguably be adequately monitored with screening tests and physical exams needn’t be surgically removed simply out of “fear.” That sounds pretty judgmental, don’t you think? Reading such things caused me to revisit my decision. And I can safely say that if faced with the dilemma today I would do the exact same thing I decided to do eighteen months ago.

For me, the decision to remove both breasts was practical. It turns out that my breast surgeon agreed. After telling him that my inclination was to do a “double” I asked him what he would advise his sister to do under the circumstances and he didn’t even hesitate. After all, I was relatively young, at 39. I have a lot of life to live yet. I, like Ms. Jolie, have small children.

Unfortunately for me, unlike Ms. Jolie, I lacked information that would have enabled me to take action before Phase One became necessary. Therefore, Phase One interfered somewhat with Phase Two because I had to (rather unexpectedly) undergo radiation which can cause a host of problems, including affecting the blood supply to the treated area, increasing the risk of infection and of developing a hard scar capsule around the implant. Furthermore, I was not able to keep my right nipple because one of the tumours was too close to the nipple. Again I decided to just take them both off, because they can do pretty groovy nipple reconstructions by cutting a bit of skin from the top of the breast, shaping and suturing it and then eventually adding a tattoo.

Nipple-sparing mastectomies are possible but the nipples do not behave the same way as before and they may lack sensation. And of course there is always that small risk that cancer will develop in the nipple.

So, here we are five months following my implant exchange surgery. My new boobs have softened and settled. But there are a few issues. The incision on the right side (the side that was radiated) is a bit hard and therefore slightly distorts the shape of the implant from a certain angle. Also, the skin over parts of the implant is so thin that I can sometimes feel rippling (sort of like wrinkles) of the implant beneath the surface.

Despite these issues, the overall result is good. Especially considering that I had radiation. Both implants remain soft and in a bra or bathing suit things generally look pretty okay.

But still, sometimes I do feel odd. I look at my reflection and I am confused by the change. The girl with long hair and big boobs has been replaced by a slimmer, smaller- and higher(!)-chested version with short curly hair.

Thanks to an infection in March, which gave me and my plastic surgeon a scare, I have not had my nipple reconstruction yet, so I sort of feel like Barbie (well, maybe a brunette Skipper Barbie because I am nowhere near voluptuous enough to be real Barbie). And I am bothered by the “seam” that the scar on the right has created. We might be able to improve the distortion with some fat grafting (during which some fat would be sucked out of my stomach — bonus — and injected in the small space between skin and silicone implant).

I know that I cannot expect perfection and I do not, particularly with an implant-based reconstruction following radiation, which is known to be problematic. I know that beating the cancer was more important than my cosmetic appearance and I accept that.

Overall I feel pretty good, but I do believe I will feel better once I have my little tweaks. The scars will continue to fade and once I have nipples, provided that goes well, my new twins will more closely approximate the real thing.

But, on occasion I do get pissed off. So let me be pissed off. You do not have to remind me that what’s important is that I don’t have cancer anymore. I know that. And please do not tell me that my cosmetic appearance doesn’t matter. In a world obsessed, and I mean obsessed with breasts and the female form? Please.

It does matter. It matters to me.

My Latest WTF Moment

It’s sort of difficult running into people who haven’t seen me since I had long wavy hair and didn’t know I had cancer. When they recognise me (and it registers) I feel somewhat apologetic at the shock and horror they experience.

Then the usual happens. After the initial surprise wears off, they ask when I found out and how I am doing and tell me I look great, which is true, of course, so I smile and thank them. Ha ha.

Once in a while I get a slightly “different” response. The latest happened just the other day, in fact. I ran into a lady I hadn’t seen (well I had seen her but from afar and she hadn’t really seen me) since last fall. Let’s call her LB for short.

After LB and I exchanged pleasantries, she touched the side of my head and said “I wanted to ask you about this haircut!” Um, yeah. Je suis très chic, dontcha know. I explained that the haircut was not my choice and then the shock and awe part happened. It happened and happened and kept on happening and there were gestures and hands clapped over the mouth and lots of “Jesuses” and even a few “fucks” thrown in for good measure. And grunts and groans. And a “but you were so healthy!” It really went on for a while. It was like watching a broken fountain: the water just came out in fits and spurts and kind of all over the place. I just stood there waiting for it to be over.

She threw in a “we thought you were making a political statement!” I considered this. Hmm. This might have been a keen assumption had I also been sporting an eyebrow piercing or a fresh tat or had I been (at that moment) worshiping the devil, cultivating armpit braids or ripping up a picture of the Pope or something of that nature. But there I was, sitting cross-legged in my premium denim (no I won’t name names cuz then you will just have to run out and buy the same jeans) and a purple J Crew merino wool sweater (don’t care if you buy that) and flats. And I was wearing my diamond studs and mascara and shit. Let’s just say I wasn’t exactly channeling Sinead or a Nazi skinhead.

“Nope,” I said. Not a political statement. The malfunctioning fountain was interrupted by the speaker to whom we were supposed to be listening and as we turned our attention that way a warm wave of relief enveloped me. Saved at last. (Although during the speaker’s comments there were a few sputters and snorts, but they didn’t really rise to the level of what I consider to be verbal communication.)

Naturally LB wasn’t done with me. The questions started again the instant the speaker had finished. The pièce de résistance was when she looked at me and exclaimed “but I don’t understand; you have eyebrows and eyelashes!” “Yes,” I said. “They grew back. I didn’t have them six weeks ago.”

“Oh my God!” She cried. “What did you do? (imagine the crescendo building….) You must have looked like… a FREAK!”

Really? [Insert stupid Beavis and Butthead breathing noises and nervous laughter here.]

What did I do? Well I wore make-up. And then it was over and the shit grew back. And now here I am, for crying out loud. All freaky five feet nine (okay so maybe eight and a half) inches of me.

I’ve looked back at pictures of myself without eyebrows and eyelashes and hair and I do in fact look pretty weird without make-up on. But that is sort of besides the point, isn’t it, people?

Two excellent thoughts occurred to me during this episode:

No. 1: Thank God I didn’t run into LB while I had no eyebrows or eyelashes, the sight of which might have led to a water show that far outsputtered the one I witnessed.

No. 2: Boy will this be fun to blog about.

Luckily I have a sense of humour and am comfortable with my physical appearance. But here’s a little tip in case you aren’t sure: if you see someone who looks odd because they are bald and/or pale and/or have no eyelashes or eyebrows or you find out that at one time they didn’t have them because they had CANCER and had to have CHEMOTHERAPY for fuck’s sake, don’t say they look, or must have looked, like a freak.

Only am allowed to say that. It’s like people being allowed to make ethnic jokes about their own ethnicity.

At the end of the day I am really proud of my self-restraint. I could say a whole lot of other absolutely hilarious shit about LB now and make some truly witty ironic comments but because I am classy I don’t want to identify her.

Now if you’ll excuse me it’s Friday night and I have to get my freak on.